10/29 Update

We just got back from the pediatrician's office. It looks like little man is becoming a great big man! :) He weighed in at a whopping 10lb, 7oz!! He is now 21.5" long! :)

The doctor had to clean out his ears so that he could see Everett's eardrum, and that made little man very, very unhappy. We got real tears and everything. Then, came the vaccinations. He got stuck 3 times and had an oral vaccination. Booo.

The doctor is working on getting us into the pulmonologist's office sooner than the end of next month, so that is a plus. Everett will also be getting RSV antibody treatment from the pulmonologist. Since his airway is already constricted, anything that would constrict it further is cause for concern, so we just have to be a little bit more careful with him.

We also got a referral for a physical therapist. It seems that Everett's right neck muscle is tight because he favors that side so much. So, we are supposed to work with him for about 2 weeks, and if we don't see marked improvement, then we have to call the physical therapist.

Ba-chan left yesterday and is now safely at home where she gets to sleep in her own bed. ;) And she gets to read an actual newspaper and drink her tea in peace. :) We, on the other hand, are experiencing our first day ever of it just being the three of us. It should be interesting this week.

Also, the caregiver shuffle begins this week. Everyone brace yourself, it should be an interesting week. :) Hopefully we will remember to pack everything, and we will bring Everett to the right house!

We went and visited the pumpkin patch last week. Here are some pictures from that. And, a few other enjoyables from our growing little boy.

Hanging out with the scarecrow.

Mom and Dad tried to make a little extra money while we were there.

One of these things is not like the others.

The pumpkins will come to me...

Ahhh...relaxing with my pals. :)

Whew. That was hard work!

Then we went home and had a bath.

Roar...grrr....tough lion.

The End.

xoxo
Margot

10/22 Update

We had an appointment today with the general surgeon and....we have collected another doctor. :) Welcome to our new pediatric pulmonologist. Whee.

I hope that we start being able to drop some of these doctors by the end of our plan year, so we start the new year off with a minimum of doctors. But, it looks like we will be having surgeries into the next plan year, so I guess it's a wash.

Anyhow, as of this point we are still a go, holding strong at 3 surgeries 6 weeks apart. This is good news.

The bad news is that after his pull-through, we will have to smother his little bottom with a mixture of various petroleum based products to protect him from his own stool. The bad news about that is our cloth diapering dreams just got whisked out the window. Petroleum based products don't wash out of cloth properly, and hinder the absorbency of cloth diapers. Damn. Now we have to get with our diaper service and see what we can work out. Boo.

ECI is coming tomorrow morning for the makeup appointment of the one that I had to cancel. This should be interesting.

We bought Everett a new mobile today. It has lights and stars. But, it has to float SO high above his crib, it seems kind of uninteresting. Grandpa Lynn's star swing is still his favorite starry mobile.

Okay, here's what I know you've been waiting for. I'll even bet many of you just scrolled right down to the pictures (that's what Daddy does. :) ).

Here are new pictures from our mini photo shoot on Wednesday.



The grandparent's meeting went well yesterday. Everyone seemed ready to take care of the little man. :) Hopefully the enthusiasm will continue. :) At least it was nice having everyone together to socialize a bit. If only Kim had been able to be here, this would have been one of the few occasions where we would have had all of the grandparents together. Hopefully we will have everyone together next year for Everett's birthday. :)

xoxo
Margot

Italy vs. Holland

I found this on the PTN (Pull-Through Network) site, and thought I would share. It really described things in a way I don't think that I have been able to verbalize:

Learning To Live In A New Place

Several years ago Emily Pearl Kingsley wrote to the “Dear Abby” newspaper column to try and explain the experience of being the parent of a special needs child. This is what she wrote:



“I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel, it’s like this….



"When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.



After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later the plane lands.

The stewardess comes in and says, “Welcome to Holland”.

“Holland?!” you say, “What do you mean, Holland? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”



But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.



The most important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.



So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.



It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there a while, and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips. Holland even has Rembrandts.



But everyone you know is busy coming and going from Italy, and they’re all bragging about what a wonderful time they had there.



And for the rest of your life you will say, “Yes, that’s where I was supposed to go. That’s what I had planned.”



And the pain of that will never, ever, ever go away, because the loss of that dream is a very significant loss.



But if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.”


xoxo

Margot

Enough talking...more showing :)

Here are the much awaited pictures. I know, less talk, more pictures.

Everett in his balloon pants.

Tiny toes. :)

Vampire Everett. Bachan is convinced that Everett thinks he is a bat because we keep our house so dark. This is what happens when someone lets the light in. :)

This is turban Everett. Daddy thought this would be fun. :)

Hmm...I think I sense a binkus nearby...

Popeye Everett.

Melodramatic Everett.

Surprised Everett.

Contemplative Everett.

Everett finally has enough hair for a faux hawk. :) Daddy is SO excited.

Everett and the binkus are having a heart to heart...I think he's trying to will it into his mouth.

Daddy is back to having the camera plastered to his face taking pictures of his new favorite subject. :)

Reflective encephalitis Everett having a discussion with the man in the mirror. :)

That is all for now.

Enjoy.

xoxo
Margot

wow.

Well, it's been a busy, busy week. I think that this has been the longest that we have gone without posting a new update. I apologize for the delay. :)

I returned to work around the time of the last blog. I'm still trying to get it all worked out, but everything is beginning to come together. Thankfully, my boss and the angel that helps cover for me are both very understanding about Everett's appointments and everything else that has been going on. This has turned out to be the best time of year to have all of this happen. If we had a whole baby, December or January would have been good times to deliver, but under the circumstances, this is turning out to be a blessing. I would never have had this kind of flexibility going into the summer.

Speaking of blessings, I have been reflecting lately on our situation. Thankfully, no one has said this to me yet, because I think it sounds condescending and unhelpful when others say it, but God really does not give us more than we can handle. Unfortunately for Everett, I think we have been handling this all fairly well, so more just keeps getting heaped on our plate, but we can still take it, so more keeps coming our way. But, I think about it, and here's where I get a bit loopy, but, what if there is a quota for broken babies? What if there is a certain number of birth defects that must be dealt out each however long? I mean, they talk about everything in percentages, right? All of the doctors tell us there is a x% chance this will happen, or a y% chance this will occur. And for all of Everett's problems, those percentages are pretty low. So, what if he if fulfilling the quota so that other babies are not born broken? What if there are parents out there that could not handle a broken baby, so Everett has taken some of that burden out of the world? Then it all doesn't seem so bad. Part of me likes to think of it that way, that he has helped the balance in some small way. The other part is sad for the baby that made it possible for Everett to be as perfect as he is in every other way.

Okay, my ramblings are done. Now for the updates that you have all been waiting for.

We went to the Urologist on Thursday. Everett does have chordee. Basically, his penis is bent and he will have surgery to correct it when his ostomy is removed.

According to the urologist, it does look like Everett may have a tethered spinal cord. This appears to be easily corrected by surgery, and again, we are blessed for it to have been caught early. He has concurred with the general surgeon's recommendation that Everett will have a MRI at 3 months old to confirm the diagnosis, and then we will add a neurosurgeon to the team. Most likely, the general surgeon, the neurologist, and the urologist will be at that surgery. It takes about a month to recover from that surgery. Then, Everett will undergo the pull through for his anus. The general surgeon, and possibly the urologist will be present at that time. Then, 6 weeks later, his ostomy reversal will be done along with the chordee correction and circumcision.

Hopefully we will be able to time these surgeries just right to get them completed before March 1 when our plan year restarts.

We have a meeting on Monday afternoon with ECI (Early Childhood Intervention). Everett was referred because of his VACTERL, but also because of his hearing loss. Again, it is because of the hearing loss that they are coming out. If Everett is accepted, then the school district will send someone out to our home on some kind of regular basis to work with him now. Once he is 3 years old, then the school district takes over with head start or some other such program.

We'll let you know how it goes, but it seems that we will not know anything until after his ENT appointment next month.

On a happier note, we are in Nacogdoches this weekend for my friend's wedding. The boys have been having a good time around town and in the hotel room. I will post pictures when we get home.

Again, sorry for the delay between posts. I will try to post at a minimum of once a week from here on out. :) And, I'll make Dylan start posting pictures more regularly, since I know that's what everyone really wants. :)

xoxo
Margot

10/4 update

Today was a very busy day for the little guy. He had a 9am appointment with the audiologist so his last meal was at 4:30am... in case they had to sedate him for the tests. He did get a little Pedialyte at 7am to help his tummy feel less empty. He was tested for about 3 hours... such a patient guy, hardly fussed at all. The results of the tests were pretty much what was expected. Everett has profound deafness in his left ear. His right ear is marginally normal (meaning, it's in the normal range, but at the far end). He has an appointment with the ear, nose, and throat doctor in November. He also has a follow-up appointment with the audiologist. She wants to monitor his development to make sure it's progressing as it should.

After the audiologist's appointment we visited Margot's studio so Kathy could have some baby holding time. Then it was off to other studio to visit Lauren. Now it's off to visit Kassie. Lauren and Kassie hosted the baby shower for Margot's girlfriends. By the time today is over, Everett won't want to ride in the car for at least a day or so. Lucky parents, he's one of those kids that falls asleep once the engine is on and the wheels start rolling.

For those of you who are curious, he had 2 types of hearing tests:
auditory brainstem response (ABR) and otoacoustic emissions (OAEs).

For the ABR test electrodes are placed on the head, a sound-producing device is inserted into the ear canal and brain wave activity in response to sound is recorded. Everett's brain didn't register any change in brain activity when sound was introduced into his left ear.

The primary purpose of OAE tests is to determine cochlear status, specifically hair cell function. Otoacoustic emissions are inaudible sounds from the cochlea when audible sound stimulates the cochlea. The outer hair cells of the cochlea vibrate, and the vibration produces an inaudible sound that echoes back into the middle ear. This sound can be measured with a small probe inserted into the ear canal. Persons with normal hearing produce emissions. Those with hearing loss greater than 25-30 dB do not. Everett's left ear had no response.

Bachan

10/2 day with Bachan

Today Margot went back to work and I spent the day with Everett. He's such a pleasant little guy. His most active time of the day is usually right after the 9am feeding - 1 hour of looking around, kicking and playing. I took him into my room, which gets a lot of bright sunlight, for the noon feeding and he stayed awake until 3pm. He eats well though he has to be reminded, at times, not to fall asleep.

This is what Everett thought about his first day with his Bachan :-0




I didn't have to replace the ostomy bag... remembered to keep venting it when he had gas. I did change a lot of very wet diapers. He gets fussy when he wakes and feels a wet diaper... maybe that'll make potty training easier. :-)

Not much else happened. Tomorrow, Oct 4, he goes to the audiologist to retest his left ear. We'll let you know how that goes.

Bachan

Fair Day!! :)

Today was officially Everett's first visit to the State Fair. "Are you crazy?? Taking a 1 month old to the fair??" Yes. We're crazy, and gluttons for punishment, but we have been blessed with a good baby, so we had a great day filled with plenty of fried food.

Everett got to meet Big Tex for the first time. Initially, he was unimpressed.

He got a little shocked when Big Tex started talking, though. He did his little flying man pose. It was so cute.

Anyhow, we went in search of all the great fried foods from this year. We carefully planned out all of our foods and our plan of attack. Then, of course, it turns out that they moved some of the more pivotal foods, so we missed out on some like the fried guacamole bites and fried mashed potatoes. But, the first 4 booths we tried to visit were moved or did not have the food that the website said they should have. So, we got completely tuckered out and had to stop to have a sausage on a stick and a drink.

Mmmmm....frozen Mojito. :) Daddy tried to get Everett interested.


But he just wasn't having it. He told his Daddy that he was just too young. So he just said "no". What a good little boy. :)


But he was still hungry/thirsty so we gave him a bottle. He said "heck yeah" to that!

Once he was fully satiated, we went in search of more fried foods. He was fairly uninterested.


We found ourselves at the Dock, which was the first place that actually had the foods that they purported to have and were in the correct location.

Clockwise: Fried Macaroni & Cheese bites, Fried Ravioli bites, Fried Potato Stack 'Ums, Fried Chili Cheese Frito Burrito

Following the traditional Fair rules (at least for our house), we only got one of every novelty food for everyone to share.

The Fried Ravioli bites were first around the tasting table. Ba-chan thought they were less than thrilling.

Dylan thought they were scrumptious.


And, Everett woke up to inspect them, but found them to be lacking in some way. We'll have to get him trained up yet.


Next, came the Fried Macaroni & Cheese bites. Dylan thought they were fun to play with.


And, not bad to eat, either.


Mmmm...macaroni & cheese.... :)

But, alas, Everett was still unimpressed.


Then, came the Fried Chili Cheese Frito Burrito. Ba-chan decided that this was her favorite of the fried foods from the dock.

Dylan thought it was okay, but not as thrilling as it could be. We decided that it was a little too messy for Everett, so he missed out. :)

Everett also missed out on the Fried Potato Stack 'Ums. Ba-chan thought they were just okay, but nothing spectacular.


Dylan...well, they were fried potatoes with bacon and cheese on top. What do you think Dylan thought of them?


Then, desert time. :) Fried cookie dough, here we come. We sent Dylan to the booth outside to grab it up for us.


Ba-chan thought it was a little too sweet for her tastes. I thought we would have to call medical services to get us some insulin into the tent STAT.

Again, Everett was unimpressed. Maybe next year he'll be more interested since he will actually be allowed to eat solid foods then instead of us just teasing him with them. :)

Since we were on a bit of sugar overload, Dylan finished off the car. :)


But, he still managed to save enough room for his favorite from last year. Fried Peanut Butter & Jelly with Banana.


Mmmmm...


After all of that eating, we just all got tuckered out. And, I think that our blood sugars all spiked and then plummeted, so it was time to head home.

Once we got home, we all bathed, and Everett ate again, and then the boys were out for the count.

Seriously, whose nose do you think that is??

And that concludes Everett's first day at the State Fair of Texas. :)

xoxo
Margot